“Your lumbar pressure is high” I remember Dr. Baraniuk commenting as a doctor started removing my cerebral spinal fluid during a spinal tap for a study. “We don’t know what it means – it might not mean anything – but I see it a lot in ME/CFS”.

Headache is a common symptom of IIH

After I was wheeled to another room I congratulated myself on having not only survived my first spinal tap but on feeling so well afterwards. I was relaxed and my mind felt clear.

In fact, I couldn’t remember the last time I’d felt this calm. I should have these lumbar punctures more often, I thought.

It was not what I expected at all, but my reaction probably wouldn’t have surprised Dr. John Higgins of Cambridge.

Dr. Higgins recently determined if Chronic Fatigue Syndrome patients also had a disorder called “idiopathic intracranial hypertension (IIH)”. IIH is characterized by high cerebral spinal fluid pressure which resolves with a reduction in that pressure.

Dr. Higgins decided to check out how common IIH was in a group of ME/CFS patients who also had significant headaches.

Twenty people with ME/CFS (and headaches0 were given lumbar punctures. Other than their headaches they had no signs (such as papilloedema or visual disturbances) of IIH. They simply had significant headaches and were severely fatigued.

The spinal taps revealed that twenty percent meet the international criteria for IIH ( CSF pressure >20cm H20). They were reclassifed as IIH patients and treated.

Most of the ME/CFS patients in the study felt better after their spinal fluid pressure was reduced – but they do meet the other criteria for IIH.

Removal of the cerebral spinal fluid during the spinal tap – which reduced the cerebral spinal pressure – resulted in symptom improvement in no less than 85% of the patients (17/20) in the study. Only five of them had CSF pressures above 20 and most had CSF pressures in the ‘normal’ range.

None had the major clinical signs (papilloedema, visual disturbances) doctors look for to suspect IIH, but when their spinal fluid pressure was reduced they reacted just like IIH patients do – they felt better.

The improvement generally consisted of reduced headaches, heightened alertness and reduced fatigue that lasted anywhere from a couple of minutes to several weeks. (It lasted for several hours for me).

These patients would likely never be assessed for IIH because they don’t fit the typical profile.

Dr Higgins concluded that the normative values for IIH are probably incorrect and that some people, perhaps many people, suffer from IIH at far lower cerebral pressures than is currently expected. In fact a recent publication found IIH that resolved with treatment in two people who did not have ‘high’ CSF pressures.

One wonders if people with diseases featuring central sensitization such as FM and ME/CFS are more likely to react negatively to what appear to be normal CSF pressures or if there are factors in the CSF that are contributing to their symptoms.

Idiopathic Intracranial Hypertension (IIH)

Chronic intracranial hypertension can take a huge physical toll. A formerly active and productive person may become too sick to take part in daily tasks. Frequently, someone with chronic IH can appear outwardly well and is frustrated in attempting to convey his or her painful circumstances. Physicians are equally frustrated since they have so little to use to combat this disorder. Intracranial Hypertension Research Foundation

ME/CFS patients don’t typically experience two of the ‘big three’ symptoms of IIH: tinnitus and vision changes (due to swollen optic nerves) but they do experience many other symptoms.

Stiff neck is a common symptom in IHH, ME/CFS and FM

Stiff Neck – A stiff neck that is hard to move is probably a common feature of ME/CFS, IIH and Fibromyalgia. The stiff neck in IIH could be caused by high intracranial pressures that cause the spinal nerve sheaths at the back of the head and neck to stretch enough for the spinal nerves to exit the spinal cord and touch the muscle tissue.

Dizziness and balance problems – it’s not clear why these are happening

Endocrine problems – are present but not common in IIH. They may be due to flattening of the pituitary glands and empty sella syndrome

Memory difficulties

Exercise Intolerance

Causes

According to the Intracranial Hypertension Research Foundation many factors can cause IIH including head trauma, stroke, blood clots, many infections (including infectious mononucleosis), several autoimmune disorders, several drugs (including tetracycline antibiotics), hypoparathyroidism and Addison’s disease.

Treatment

Treatment mostly consists of carbonic anhydrase inhibitors which reduce CSF levels. The most commonly used drug to treat chronic IH is acetazolamide (Diamox) but Methazolamide (Neptazane), furosemide (Lasix) and topiramate (Topamax) are also used. The only member of this group that appears to be used somewhat regularly in ME/CFS and/or Fm is Topomax.

SPINAL TAP POLL

During or after my spinal tap my doctor told my that my cerebral spinal pressure was

Normal

Moderate to high

High

Didn't say

Immediately after my spinal tap I felt

much better

somewhat better

no change

somewhat worse

much worse

If you felt better how did you feel better

headache improved

more alert

thinking more clearly

more relaxed

Conclusion

Much more rigorous studies are needed to validate these preliminary results but with IIH we find yet another intriguing (and unexpected) possible intersection between ME/CFS and an another disorder. We also find another disorder that has its own diagnostic challenges, which needs a great deal more research, and is probably significantly under diagnosed.

Nevertheless, the high rate of symptom relief in this no doubt hand-picked group was striking and hopefully more researchers will pick up on this topic. If you do have undiagnosed IIH diamox might be an option.

Dr. Perrin has proposed that problems with central nervous system lymphatic drainage which affect the cerebral spinal fluid are common in ME/CFS. We’ll look at his hypothesis shortly and see if what, if any, connections it may have with these findings.

Comments

its about time! i ALWAYS had pressure in my head and no one would do a thing about it. hitting my head was now normal from M.E./CFS from day one. also asked for Diamonx only to be told that they never heard of it or NO they would not give it for my HEADACHES and boy i never had headaches like these b4 whereas i was in too much pain to even talk!

PRESSURE, PRESSURE, PRESSURE!!!

now, is having a spinal tap dangerous? i was always told NOT to have one done. anyone?

Hi Dee,
I understand your reluctance regarding an LP ( spinal tap) but I have literally had at least seven. I Immediately have a sense of relief. My pressure was extremely high this last time. The headache pain prior to an LP is literally so awful I rank them above migraine headaches

When performed by a skilled physician there really is no pain. just a strong feeling of pressure in your back which is over quickly. It helps to be super hydrated and caffenated, too.

There is so much critical information about what is going on in our Immune systems to be learned from the spinal fluid that really makes it worth the procedure. It is imperative to follow the pre/post instructions your doctor’s office will provide. Expect to bring someone with you and also expect you will you will be lying flat, no head elevation for at least 12 hours

I can truthfully state I have never regretted a single LP.

I hope you find this information helpful, from one who has been there.

I did OK with my spinal tap – but then the next day I tried to travel and lifted a heavy bag to an upper baggage compartment…That was a big mistake:)….I think spinal taps are tolerated quite well so long as you stay flat for as long as the doctor suggests.

Yep, that’s me! That is also why I now sport a shunt….I didn’t have a choice as my optic nerves were swollen and I was beginning to loose my vision. My opening pressure was almost 500 and I was allergic to diamox which is a standard treatment for IH. One of my doctors said that yes, viruses CAN cause elevated cerebral spinal pressure-many of which are chronically activated in ME patients. Hmmm interesting…

When I hear patients say they can’t stand up and have to wear sunglasses indoors in a dark room I can relate. I was there and completely bed-bound. The elevated pressure added tremendously to my fatigue, shortness of breathe, noise sensitivity, etc…I do not respond well to spinal taps, but Dr. Peterson is hands down the best doctor I’ve had perform this test. He also understands the extra care for recovery involved with this test. There are risks to having a lumbar puncture, so a conversation with your doctor is absolutely necessary.

Yes, Lisa you are absolutely right that there are risks! I had one at Mayo Clinic. The technician hit the nerve in my leg causing severe problems! Turned out she was a student!
Moral of the story is to look into the person doing it and fuss if it is not someone very skilled! It is so easy to think that if you are at Mayo, Duke, etc. that it will go well. Ask for the Attending Physician to do yours!

Interesting, my tap was 7 years ago, and no they’re not dangerous, but couldn’t convince the idiot neurologist to do a pressure! My headaches did get better for several days! I’ve tried diamox, no help, and topamax is a miracle for my headaches, but I still get them, especially as I’m sicker, or with PEM. Is anyone else affected more when laying down?
There are actually shunts that are used to permanently reduce the intracranial pressure as well.
As usual- more studies, another subtype?

Well, I have pressure in head mostly forehead which is hot most of time and in Summer it is worse, ie I get too hot in the head which makes it worse.
I also have tinnitus, optic neuritis and vision problems. My stiff neck pain and deferred pain to shoulders is I thought due to the lymph nodes there, but maybe it is this IIH? (or is the IIH really caused by lymph problems?).Also intolerable nervy type leg pain at night, which I am told is RLS.

I did feel better immediately after lumbar puncture by the way.
Now why the hell didn’t any of the doctors or neurologists at that time pick up on what seem to be IIH symptoms I have?

I am going to print this article out and take it to them.
I don’t really see this IIH as the cause of everything, but more of a symptom, of which there are many, but what do I know. I am certainly going to give those treatments a try! and who knows…

Tim, It could definitely be a cause of tinnitus, optic neuritis, and vision problems- they’re all listed as being caused by IIH. They’re all potentially caused by increased pressure on cranial nerves by increased fluid pressure in the brain.

I hate to say it but has any doctor- even our “precious” Dr’s like Bateman, Klimas, Petersen, Montoya, etc.,. put this on their rule out lists???

I swear, having been around “Dr Houses” before, people with 4 or 5 Board Certifications, it’s amazing the number of obscure, rare diseases they can just rattle off that could be the cause of a certain set of symptoms that regular Internists would never even know of or possibly heard of. I’d be rich if I had a penny for every time I told my wife I wish I could find a really smart doctor, and I’ve seen two of the above…..

From the very beginning of my CFS/ME diagnosis (1996), I had severe, daily headaches. In 2004, I saw a neurologist who said I had IIH, or Cerebral Spinal Fluid Pressure problems. The best remedy I discovered is being flat on my back, no pillow, in a dark, quiet room (Hopefully with sleeping).
The meds didn’t work for me. My neurologist told me CAFFEINE is the next best “drug” for this condition… And IT IS!! I have had the horrible pain, no energy, insomnia, cognitive slowdown for almost 19 years! My quality of life is very poor. With 1/4 cup of coffe, I get my life back for 5 hours! Then, I get a bad flare-up of all my symptoms for a few days, and back to the poor quality of life. However, the coffee is worth it!!!

I really love the high – a real high – I get from small amounts of coffee. The problem is that I tend to get jittery and get stomach cramping afterwards(darn!)

Coffee vasodilates the blood vessels; may be that’s why it’s having some affect on the CSF as well. I wonder if there’s a connection between vasoconstricted blood vessels and IIH? I wonder if migraine is more common in IIH?

I feel so incredibly good ( no pain, almost normal, no malaise or exhaustion ) after a cup of coffee that I rush about trying to accomplish all the things I have neglected due to being bedridden and in hell. Then….I crash badly. I am working on the moderation part. I had no idea that other CFIDS patients were experiencing similar effects.

A feeling of pressure in the head is something I can really identify with, getting worse as the day goes on and when bending over. Hot weather too (big time) and even changes in atmospheric pressure (lows make me feel really crappy). Stiff neck and vision problems too. I don’t really tend to get headaches these days – more a feeling of inflammation/pressure but used to get what I called ‘mini migraines’ – stabbing pain behind the eyes.

I’ve also had constant tinnitus since day one and had previously come across some meagre information on its prevalence in ME/CFS :

“Tinnitus is a common symptom in ME/CFS. Although the percentages affected are difficult to obtain, the Ramsey definition of ME lists tinnitus as a symptom occurring at least as frequently as sleep disturbances.”

(my quote) : )

So maybe tinnitus isn’t that unheard of?

I haven’t had a spinal tap thankfully so I can’t help there I’m afraid.

You may be onto something with the suggestion that even marginal physiological changes in things like CSF pressure might trigger a negative reaction? Certainly ties in with the notion of activated microglia and ‘alarmins’.

The MRI did not specifically give me the diagnosis…The lumbar puncture was the confirmation. However, the MRI did show a partially empty sella and slit ventricles. Personally, I firmly believe that IIH is a symptom of my ME. I’ve been thoroughly evaluated and confirmed by Dr. P to have ME/CFS. Now that I have been treated with the shunt, I am able to function and hold a part time job. Unfortunately I was reminded last week that I need to monitor my energy envelope a little better. I ‘tested’ myself out by taking a long walk and ended up with severe headaches, malaise and inflammation that lasted a week. I am very grateful for some part of my life back.

I’ve had pressure at the back of my head since having ME, which makes it difficult to lie on my back for any length of time. It’s gotten worse recently and now have additional symptoms. I’ve done a bit of searching round about, before I approach a doctor (lessons learnt from the past). It fits with Chiari Malformation better than IIH, but hopefully will get confirmation soon. It could be that this fits with the Encephalomyelitis part of ME or perhaps a type of Mitochondrial Encephalopathy. Who knows? Is anybody doing any major studies (large cohorts) on this aspect of the neurological problems, apart from hyper-sensitivity/arousal?

I have a pressure (several even) in my head but mine is of the good, brainfixingitself, kind. With neurotransmitters galore and cellmetabolisms starting to work again like pre-virus. And can’t wait for it to end cause it’s bloody painful and I want to go to the beach (or something ;)).

Ofcourse! ☺ I would’ve written entire blogs about it if it weren’t for the brainfog turning into a tsunami and one part of the “medication” that’s already somewhat alternative and on their website they make it sound like complete gibberish. I started with the gibberish which made my temp drop to normal and the sore throat go away but other than that things stayed the same. Then I was on AB’s for months which I then thought didn’t help at all and just made me more ill (I had to stop for that reason). Tried the gibberish again (only for Epstein Barr this time, first time there was a whole zoo of drops I had to take) and this time it felt like my brain was turned inside out, starting with a major headache and then about a month of dizzyness&puking. But again, nothing much else happening, aside from some trembling coming from my spine and, oddly enough, the bridge of my nose, and my brain. So as always I put plan B (or by this time it was plan Q or R) into action which was nagging my doctor for thyroid hormones. That made the trembling far, far worse and turned it into the pressure(s) mentioned above and I would’ve stopped immediately if I wasn’t so sure that this is going to get me out of this MEss..

Hi Soph, A very interesting blog. Would love to know more about the treatment and how you are now and if you could please possibly give some more details that would be brilliant, if you are up to it. l too have head pressure pains for a long time and a Dr mention to me last year about IIH and so l am very keen to know about the drops/treatment/antibiotics that you have taken as every little bit of information is helpful and also
the contact for the Doctor/website please. Thankyou very much.Kind regards

hey Ros, am sorry for the late answer but I’m not getting the “you have a reply”-mail for some reason.. I’m Dutch so my doctor would be of no use to you and so far, when I even mention the alternative stuff, I get snubbed big time ;D If you’re interested nonetheless then perhaps better contact me; s.mail@xs4all.nl

maybe ttyl!

ps “just” head pressures doesn’t mean I could give you any tips, you would have to be sure that it’s virus-related, if even only a little

Yes! used to have pressure in spine and brain with every relapse of ME and it would last for a week or so. I figured that was like meningitis, encephalitis symptoms of ME. Stiff neck and headache but more pressure in the spine and head than regular headache. Blurred vision, worse lying down. Intense! Scary!

After seeing Dr Enlander in NYC and starting on his protocol with Hepapressin injections once a week and taking his supplements those pressure in the head symptoms reduced and then stopped. Also adding LDN probably helped. Within a few months of starting this protocol the meningitis, encephalitis symptoms were a thing of the past. It has been several years now that I have not had those symptoms any more. Worth a try!!!

Odd, I thought those were common symptoms for us. They certainly are for me. Both are very pronounced, and both fluctuate with other symptoms. In a crash, my vision gets horribly bad. I’ve grown used to the 24/7 tinnitus. Used to have bad neck pain…not anymore.

Encephalomyelitis, or cns inflammation, involves increased pressure as well. Of course it would be best to treat the cause of that inflammation, but until we learn what that is, a treatment aimed at just reducing the inflammation would be awesome. Encouraging to see some reported positive results. Thanks Cort!

I can’t believe it’s taken this long to figure this out. I guess when people say they have pressure in their head and there are no outward symptoms, then they’re crazy.
I get the pressure, but it’s worse in the afternoon, when also accompanied by fatigue, then usually eases up in the evening. I sometimes get the visual auras, often brought on by hunger and fatigue, relieved by eating something. This is my life for decades.
Perhaps the virus causes an immune reaction to irritate the microglia, which draw in fluid.

Thank you Cort,I have also suffered and still suffering with ME,/CFS with the pressure in my head and migraine and headaches,and chronicpain all over with sever blurry vision and gut pain at times.This article was very interesting.Researchers and doctors are really starting to get a picture of just how much we suffer.I pray one day their will be a cure.I just enrolled into CFIDS to be included for testing and research for ME/CFS,and FIBOMYALGIA.,I have been bedridden most of years since I was diagnosed with Epstein Barr Virus on October 1,2008 and never recovered.After seeing approximately13 different doctors and neurologist and finally a Rheumatologist in 2009 at The GoodSamaritian Hospital in Baltimore diagnosed me with ME/CFS .I had treatment using antiviral meds and treid many other meds with no change in my health.Also on transdermal pain medication and Percocet because pain becomes unbearable at times.Fatigue and have no energy and pain keeps me in bed.I have had blood clots and been on comidin blood thinner since blood clots.Cort,is their any other meds I could try that would give me more energy.Doctor put me on Retilin as I was once taking it for ADHD.It does help me with being able to drive to doctors appointments and not fall asleep driving.Retilin also help with brain fog.I was 48 years old and type A personalty and worked 7 days a week 16 hours a day before contractingthe Epstein Barr Virus.Another interesting point I want to make is I am also low testosterone and have another of my two friends with ME/Cfs also note they to have low testosterone and have to get two injections a month like me.The one friend is also PTSD and was a solder and has all same symptoms as I do and also is in bed most of the time.Thank you Cort for putting all this stuff out for us to read and study to help us find a better way to handle this disease.GOD BLESS YOU CORT

Hey have you tried LDN? If you can get to medical marijuana I would definitely give that a try for the pain. The Pridgen trial so far looks like it was successful – may that antiviral/inflammatory combination is really something. We’ll know more later but I would definitely put that on the list of possibilities. Of course upping the low testosterone is another option. It think ME/CFS treatment is probably more about hitting all the different problems than anything at this point. Good luck!

Thank you so much Cort for writing back.I never expected to hear from you so soon.It really amazes me how you can respond to so many messages.Any way Cort you mentioned that Pridgen Trial what is this,?I truly would ask my doctor if she would put me on an antiviral with an inflammatory and I am sure she would if I knew what drug to ask for.If you can send me the name of this drug I will love to try it.I believe that the inflammatory would help relieve some of the pain.Are most people with ME/CFS taking amphetamines like Retilin for to treat the sever fatigue.I know its has helped me?The fatigeI deal with is so bad that I was falling a sleep just driving to the doctors and have fallen asleep just driving to the store.My fatigue is so bad I sleep 16 hours a day before being put on retilin.Is there any other of readers experience the same kind of fatigue I am speaking of?Thank you Cort for all you do to try and share your great wealth of knowledge and God Bless You.ti

never had a spinal tap, never likely to have one in the UK. I have had a swollen head at times. Thought people might be interested in this

“Foods that are rich in vitamin A and tyramine may have an adverse impact on intracranial hypertension. Tyramine is a compound formed during the breakdown of tyrosine, an amino acid and can cause blood vessels to dilate. For this reason, foods rich in tyramine should be avoided. These include preserved, dried or aged foods such as pickles, pickled foods, salami, pepperoni, sauerkraut, olives, fermented soy products, nuts, aged cheese, beer and wine. Foods with high levels of vitamin A should also be avoided. These include liver, carrots, tomatoes, sweet potatoes and green leafy vegetables.”

I recently had two craniosacral sessions with my osteopath that brought tremendous relief of symptoms: brain fog, sinus blockage and after the second session, a tremendous feeling of alertness, energy and well-being which lasted for about 10 days. Dr. Wedlake asked me if I had had a foreceps delivery and told me that the sphenoid bone in my head was greatly compressed (.5 on a scale of 0 to 10). He also said that my cranial rhythm was slow, consistent with CFS.

Each session consisted of gentle holding of the head, sacrum and spine. There was no massage, palpation, or pressure beyond the “5 grams” usually described in this kind of work. I felt safe and cradled. During the first session, my sphenoid (a bone in your head that houses the frontal sinuses and pituitary) expanded from .5 to a 3. During the second session, it expanded from 3 to 7.5. After each session I crashed for a day, with a lot of emotional release after the second session.

After the second session, I drove long distance to get an exercise stress test and then back again. I did extremely well on the test although I was still in CFS range. I didn’t crash until after I got home. But for 10 days I felt amazingly well. Which makes me wonder: how much does birth trauma or head trauma as adults contribute to a predisposition for CFS?

To connect the dots, there is an osteopath in England who treats CFS patients with craniosacral work. His website describes the importance of having proper lymph drainage and cranial fluid circulation. Without proper drainage pressure builds up inside the cranium. And if osteopathic manipulation relieves that pressure it seems like it could be a good solution to the problem.

I, too, have a constant sensation of pressure in my head but none of the other IIH symptoms, which is probably why no doctor has ever checked me for it. I’ve tried three of the drugs mentioned and had adverse reactions to two of them.

My daughter (diagnosed with ME/CFS & POTS) recently had an LP and her opening pressure was extraordinarily low. Her neuro said this accounted for her symptoms, headache, brain fog, weakness, fatigue and is consistent with POTS. She suggested caffeine to increase CSF. So really confused now!!

Thanks to all that have posted on this. I have learned a lot, the most major being that so many things I just experience most of the time are symptoms shared by others. After 10 years I just try to keep going. The cranial pressure issue that I haven’t read/heard about before but many of the symptoms related by people i.e. tinnitus, blurry vision, migraines (I get ocular ones quite regularly) with blurry vision, trouble focusing sometimes for many days and of course the ongoing fatigue -these are all constants in my very circumscribed life. There are no specialists where I live and although there is now a complex disease clinic in Vancouver BC I haven’t heard from them although my test results were sent in a year ago. They are triaging and dealing with Lyme disease besides ME/CFS and FM so perhaps that is part of the reason.
So thanks again, I actually feel better just knowing I have company and a big thanks to you Cort. I am constantly amazed by the quality of the posts you put together for us.
Bless you.
Margo